- You are not alone. While traveling for work a few months ago, I sat next to a mom and her 11 year old daughter. They were headed to a children’s hospital for some experimental surgery, hopeful that it would help her daughter walk as she was losing more and more movement with each passing week. Over the course of the hour and a half flight, we discussed her daughter’s history, medical mysteries, the challenges, the heartaches, the successes. I shared some of my own with my daughter, and what had worked for us. We exchanged numbers and she texted me shortly after parting ways that there had been a mix-up and they were going to have to wait for the next hotel shuttle. I immediately offered come back to the airport and give them a ride to the hotel in my rental. She insisted they would be fine, but thanked me profusely for my unexpected kindness.
I have met a lot of parents via social media and some in real life that are on a similar journey of healing their children, and I have found that there is almost always an instant, unspoken bond between us. We are rarely at the same places in our journeys and may have strong differing opinions on certain topics, but I will still vigilantly assist and defend this virtual stranger simply because I know how much it means to them. It is strange and amazing, like 2 veterans who have witnessed the same horrors that others simply cannot relate to or understand. Many of us have little to offer in the way of assistance except to share our collective wisdom and support in the form of our words, so that’s what we do. I would not wish our experiences on my worst enemy but I have found an unexpected comfort in the knowledge that at any given moment, thousands of other parents and caretakers are out there fighting alongside me in this epic battle.
- Take care of yourself. The truth is that I’m not a person who handles adversity well, I’m more of a ‘fixer’. If there is a problem, I don’t tolerate it – I ‘fix’ it. Perhaps that’s why software engineering is such a good vocational fit for me. I remember at one point early on my husband said to me, “Tracy, you cannot debug an infant the way you debug a computer program.” (He was partially correct.)
At any rate, I must have had at least a dozen or so different people say these exact words to me, “Remember to take care of yourself”. I always nodded enthusiastically, but internally I thought to myself, “Oh, I will – just as soon as I get my kid’s health problems worked out!” But that’s not how this process works, it’s a journey. You will cross the finish line a thousand times and never at all. In the words of Amy Yasko – it’s a marathon, not a sprint and you will make it farther if you recognize and honor your needs along the way.
Don’t get me wrong, there have been periods during my daughter’s life that did not afford any ‘me time’, when we were simply doing everything we could to survive until the next day. But it does get easier, you will find a rhythm amid the chaos and those are the times when you need to fill up your own bucket. I used to think I was being selfish when I did so; how can I possibly go work out or sit and meditate when my child is physically hurting herself?! But that’s just it, I have more patience and tolerance for the terrorizing realities if I take some time to care for me, and I find it easier to recognize and appreciate those precious, happy moments. (Not to mention, I have had some of my greatest ‘AHA!’ moments regarding my daughter’s conditions while meditating or praying.)
- Every child is unique. As a parent, when you have those breakthrough moments with a treatment, I think it’s natural to want to scream from the mountaintops that you’ve ‘finally found the answer!’ What I have learned, is that the answers for my child are not necessarily the answers for other children. There are countless variables that effect how and why a child (or person) arrived at this exact point in their health. (I believe ‘Bio-Individuality’ is the current buzz word of choice.) It is a perfect storm that you could not possibly duplicate, even if you tried. I’m not even certain that our own ‘breakthrough’ treatments would have been as profound, had they not occurred after the other treatments we had already implemented and at the time we tried them.
I think it is our instinct to want to help every single parent and heal every child we encounter, but it’s important to remember that everyone is at a different place in their journey and we are all dealing with our own unique struggles at any given time. I try to remind myself that even a gentle and subtle suggestion might plant a seed that will blossom when the time is right.
- Keep a log. If there was one single piece of clinical advice I could give parents, it would be to keep a log for their child (and even themselves). Our environmental and food allergy testing has come a long way, but my guess is that it’s still only in the 70-80% range of accuracy – at best. And there are no labs to account for chemical sensitivies, occurring in individuals with metabolic or detoxification shortcomings. The single best way to determine one’s tolerance to anything is through trial and error. (Dave Asprey calls it ‘Bio Hacking’ oneself in his book “The Bulletproof Diet”.) Our daughter’s log consists of a spreadsheet that I’ve modified as she’s grown and currently accounts for her daily food, supplements, and any behavioral or physical anomalies (extreme hyperactivity, rashes, extreme defiance, fussiness, sleep troubles, diarrhea/constipation, etc.)
I don’t know how we could possibly have unraveled some of the medical mysteries about my daughter without that log. For example, we discovered she cannot tolerate purines. Purines are a natural food chemical found in large amounts in certain foods such as liver and cauliflower. Her symptoms of purine intolerance are largely behavioral in nature, which makes it particularly difficult to identify vs a consistent physical symptom such as a rash or stomach upset.
I would wager to guess that virtually everyone is battling with at least one unknown environmental, food, or chemical sensitivity – contributing any number of symptoms.
- Ask for help. Some of us are excellent at recognizing and communicating when we are in need of assistance, I am not one of those individuals. To be honest, I never really needed much help before – not like this anyway.
I inadvertently stumbled onto a mother’s blog early on in this journey (one of many). She had a young, teenage daughter who suffered with severe ASD, and the child often became physically violent with her. Her husband worked long hours, and she was responsible for caring for her daughter along with their other children. Aside from sharing her own story via her blog, she participated heavily in a grass-roots community effort to help other parents in similar situations navigate the state and health insurance paperwork and get the medical and financial assistance they so desperately needed. The last post on her blog was written by a dear friend, asking readers for support to help the family in their time of greatest need. She went onto explain that the mother was in prison after trying to take her own life and that of her daughter’s by lighting a charcoal grill in an enclosed vehicle with the 2 of them. Both were found, survived, and treated for smoke inhalation.
I remember sobbing for weeks, every time I thought of that poor woman and her daughter. Even now, I cannot help but tear up. Caring for a seriously ill child will take EVERYTHING out of you. The stress, the sleep deprivation, and the trauma are enough to turn even the most hardened individuals inside out. Know your limits, and honor them. When it gets to be too much, screw your pride and ask anyone and everyone for relief. I found that the help was rarely where I expected it to be, but it was there nonetheless.
With Peace & Love,